Hello,
I'm a first timer to the forum, so I apologize if I'm "out of order" posting here as opposed to some other place.
I've read the survivor forum for years under various topics - e.g. mucositis. My quick background - SCC of gingiva in 2004 (non smoker, non drinker) 50's, diabetic, 2 recurrences (pre-radiation)- surgeries, radiation (entire oral cavity - IMRT 66 gy completed 18 months ago, dry mouth, trismus, couple biopsies (inflammation), take various meds including over the counter anti-inflammation/pain meds . My main problem is oral pain post radiation (18 months after radiation) - everthing I put in my mouth hurts - medication (e.g. Nystatin burns), most food burns (got to wash down with water asap), can only drink water/tea; I'm very dry always drinking water. My docs - ENT and radiation oncologist had claimed I was a "slow healer" but now are not so sure (they've called it mucositis but I wonder if radiation just destroyed my oral tissue permanently). Also when I talk alot - my left side (where I have up/lower teeth left) really gets raw and more pain (also have alot of yellow spots that come and go - treat with Nystatin liquid - helps but doesn't solve). I see very few comments about oral pain after oral radiation when completed even just months ago - any thoughts on my facts/issue (especially the pain) would be appreciated.


Jim04 - oral/gingival SCC in 2004; surgeries, radiation, 2 recurrences